Questions Questions Questions....(hopefully!)

Saturday, November 07, 2009

After false alarm number 2 I have been really tired. Had the first essay of my uni course due but wasn't able to work much as I was just exhausted, dizzy and tired for a few days. My tutor gave me an extension so I had more time but it really was a slog to get it done. All finished now and just catching up on everything else again. I am very impatient waiting for my marks to come back!
On the bright side having all this work to get done has helped me not to focus too much on my false alarm and forced me not too feel too down about it. I find that I get quite depressed sometimes and start to really obsess about the when the next call will be. On the down side I have felt very stressed out and my body has been acting out a bit in response. some of it is hormones too but lungs have been sore and tight, back and shoulders very painful, tension headaches and dizzy spells occuring on and off so not been a pleasant time health wise.

I have heard that my Guardian piece should be in on the 21st of November so dont forget to grab a copy, will remind you before then! Had my photos done for the piece last week, turned into a mini photo shoot! photographer was lovely, took hundreds of photos (only one will be used) and I got to have lots of fun posing :) Very much enjoyed.

Going to be cheeky now and steal an idea from another blog, (sorry Em!). Basically the idea is a Q&A blog, you can ask me a questions, about me, my life, transplant, waiting, CF anything you fancy (within reason!) and I will answer you as best I can.
I love the idea of doing this as i get feedback from all of you and it will be interesting to see what you ask. I'm a little worried that no one will ask anything but if you dont then I'll drop the idea ;) So please, leave me a question in the comments section below, just click on comments at the end of this post and fill out the form, you can leave them anonymously too if you prefer! You can twitter me questions if you like but would prefer them left here ;)

I will give you 10 days (probably slightly more in reality as its me) to ask! On your marks, get set....GO!!!!

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  1. Hi

    I was just wondering what the hardest part of all this has been? Is it the false alarms and the false hope, or the times when nothing is happening?

    Thoughts are with you, now as always.

  2. At what age were you diagnosed and what are you studying at Uni ??

    I think you are a very brave young lady to be so positive in getting on with things, when a lot of people in the same boat would probably just lie down and give up

    I'm sure you'll get your transplant soon - they do say 3rd time lucky, so everything crossed for you

  3. Have you had a lot of trouble with pain and/or pleursy? I've had pain in my lungs for awhile and never really realized how painful lung disease can be. So I was just wondering what your experiences with that were and how you manage it.

  4. Hi Tor,
    Just wondering if you have ever considered expanding your blog idea into a fully blown autobiography? You could write a brilliant book, makes loads of money for CF, bring transplant concept to a much wider audience. As you know so many famous people now I am sure someone could point you in the right direction to have it published. There is a brilliant Hollies track called 'All I Need Is The Air That I Breathe' which if nothing else is a great working title, as is 'Third Time Lucky'. So how about writng a book then????????? xxx
    love APB

  5. Do you ever get p****d off when you get referred to as a Cfer or in the gang, some reason it always yanks me chain!?

    I gota start IV's tomorrow and feeling sorry for myself too.
    Chin up x x

  6. Hi Tor

    I am planning a post on my blog about Organ Donation and the importance of being on the register. Would it be okay if I placed a link to your blog on the post?

    Best wishes, Angela x

  7. Hi

    I have a 19 year old brother who also has CF and I think everyone should go out there and get a donor card right really can save someones life!

    Take care of yourself!

  8. Hi Tor

    Duncan Bannatyne suggested I follow you on Twitter and pleased I have. My nearly 16 year old son also has health problems and will need heart surgery. He is very negative with life at moment especially as every job he wants to do he won't be allowed to do, even after his surgery Just wondered what tips you could offer him regarding staying positive as you seem so inspirational.

    Hope all your dreams come true.

  9. Hi
    I have just seen this through Ben Shepherd on twitter.
    I also love all musical theatre, apart from Phantom, which other show would be your fav?
    Stay brave and hopeful you are a truly wonderful person

  10. Do you ever feel like giving up on life?

  11. Do you ever encounter difficulties with wheelchair access in public? Based on personal experiences, what recommendations would you offer to make life easier for wheelchair users of all ages? Thank you.

  12. i am happy to find you doing well...and i am so sorry about the false alarm. i know it is way over the 10 day marker, but i have a question. Have you ever concidered comming to the US for your transplant? is this even an option?
    never stopped praying,

  13. Thanks for such an honest and poignant Guardian interview. You've encouraged me to sign up for a donor card for the first time.

    Question: what are the things which make you happiest?

    Thanks again,


  14. Ok if you don't mind a question from someone new here goes... I'm a life long wheelchair user and I was find it surprising what people new to chairs make of it. So what surprised you most about using a wheelchair when you started? Also, because I love to read and ask everyone this Do you like to read and if so what's a book you recommend as great to read?